Mal de Debarquement syndrome?

I went on a family vacation to the Ocean in August of 2012.  I can't remember exactly when my dizziness started, but I know it was very obvious to me in September.  I passed it off to my allergies and made an ENT appointment.  I had been on the back of a Jet ski at the ocean, but had taken OTC motion sickness medicine before going out. I also was swimming in the ocean a lot.  My whole family has bad motion sickness.  My son is the only one who did not take it and he got really ill and had to get into the water.  I am wondering if I have Mal Debarqument syndrome.  I remember taking the motion sickness medicine after the trip thinking it might help my dizziness (thats how I know I was dizzy shortly or right after the trip)  I have had ENT eval and nothing found.  I was sent to a neurologist and nothing found.  MRI done of brain and neck.  I have had some neck pain that started about a month or more into dizziness.  I think from tension from dizziness brought on tight muscles.  This disorder has been thrown out there by PT and ENT but nobody offers direction.  I do have 3 appointments scheduled with otoneurologists two in ohio and one in chicago.  Not sure which one is best at this time.  It is really affecting my life and making me soooo depressed.  It is hard to concentrate.  When I am still it is worse.  When I lie down to sleep it is very bad so I take benedryl to knock myself out.  I eat all the time thinking food will make me feel better - thats not great.  I am exercising on an elliptical an hour a day and feel great during that time.  Nighttime is the worst when I am sitting watching TV.  I am a nurse and follow-up with clients as a supervisor in the home.  I find it really hard to sit still and have a conversation the dizziness gets worse.  

Who performed your perfusion? Was it with streptomycin? One ear or two?

I just tried standing on one leg and shaking and nodding. Sorry to say it did not help.

I have this also and found that right before take off of the plane (say 10 minutes) I take a valume and this has proven effective...

Are you feeling better yet? If so what has helped you? I have the exact same feelings going on. Thanks

I've been dealing with this for 6 plus years now but didn't get diagnosed until last year. The first time I had it they diagnosed me with mono and food poisoning. Then it happened again and I was diagnosed with reoccurring mono. Long story short, I finally connected the dots to realize that it was being caused from plane rides or boats. The mono spot that was positive must have been when I contracted it while I was really young and didn't have symptoms because I had never before been diagnosed with mono. What has worked for me is a number of things to prepare for a trip. I usually start using a Netipot with distiller water once a day a few days before I travel and twice a day while a travel because I had good luck with this on a two week/two leg flight trip just prior to seeing a specialist to get my diagnosis. Once I saw the ENT specialist he suggested taking Clariton D and hour before boarding along with Xanax or Valium. Then whichever you are prescribed every night before bed until you come back with the same regimin before boarding. My MdDS seems to have the worst effects on plane rides, so that's why I say "before boarding". The first time I had this I was out of commission and thought I had a neurological disorder. I tried all kinds of naturopaths, had acupuncture done, took coconut oil (yes that was also some advice), and non of that worked. I find that if I take the drugs prescribed my symptoms last month or less. There's also been studies showing that small doses of Valium or Xanax aren't physiologically addicting and the dosage that you need to get past this is small along with the duration. Honestly, anything is better than feeling like a bobble head and have zero brain power to get through the day. I've been on birth control forever because of ovarian cysts and have read that this can be hormonal, so my next step is to try and decrease the hormones to see if this helps the MdDS but doesn't aggravate the cysts. Please let me know if anyone has successfully y tried something similar. Good luck all. Hope this helps :)

I tried taking the birth control pill to see if it would help my mdds. It made it worse so I went off. Maybe I shld have tried longer. But the first month on was apparently worse than I had been. I'm better now that I'm.off. has topamax helped anyone? Only relief I find I from klonopin.

Thank you so much for this information, have tried everything, willing to give this a go, hoping it helps me as it did you

Hello to those who may still be participating in this discussion. I just wanted to share that a large group of us MdDS patients are starting a new forum for discussion of treatments, suppport, and ideas for beating mal de debarquement syndrome. The website is mddsforums.org

Can you explain and did you have complete recovery from MDDS?

Did you drink decaf green tea or just regular w caffeine?

Try this: stand on one foot. Close eyes. Shake head no, then yes, starting slow and speeding up till your head is jerking. It makes my ears ring but did nothing at first. After 3 days I have quit rocking for today only. Who knows about tomorrow I have been rocking for four months. Today is wonderful. May not work for you but worth a try.

For more information and support groups see Mddsfoundation.org.

This forum was taken over by SPAM.

Hi. Very interesting reading! I am suffering from this first time. I am leaning torward a thinking it is a brain thing. Processing. I cannot rule out hormonal changes though. I will tell my story. I have always been very prone to motion sickness. Last summer I noticed that we traveled a lot, planes and boats. Suddenly, I don't need motion sickness pills?! Cool I think! At the time I was 47, and starting peri menopause. I should also mention, right before this status change in motion sickness, I also had a tumor removed from a parotid gland, and the gland removed. I considered this a happy side effect of an unfortunate tumor. Tumor was non cancerous. Now I am not so sure. This fall, I took a dive trip to Australia. Lots of flying, and 7 days on a live aboard. 2 days of choppy seas. No problems on the planes again. One rough start to the day, vomited on the boat, took motion sickness pills, and never again. Solid footing! I was amazed at how easy this was for me! After 3 days of diving, got off the boat for half a day, and it took me about 3 hours to get my land legs. I considered this normal. Got back on the boat...again easy. During my last dive. I got nitrogen narcosis. Dropped from 60ft to 97 ft. Very quickly. I felt no pain. I had to be brought up. Upon returning, in addition to the land sickness, I have some loss of hearing, and feel like there is water in my ear. ENT says there is barometric trauma, dried blood and fluid behind the ear. However, even though there is trauma. The vertigo went away, while on a plane, and hit critical mass, once I made it back home. I have never had this problem before. Always felt better once I got off the boat/plane whatever. Never in reverse! Another note, flying back from cairns to Sydney after the dive ( about 24 hours) I had severe anxiety. Another thing I have never felt before!! That is a somewhat common thread I read here. I did the epley maneuver. I did get about 50% reduction next day, did it again, and no more improvement. I slept a lot. That also seemed to help. But I read one guy had some luck with this water/kayak therapy. They dunked his front of the kayak up and down. Also read about the rock concert/ sensory thing. Constantly tenancy get in mosh pit. So I thought why not try a water thing. Hot tub in the backyard. It felt so weird. Like I was in a sloshy boat. The ferns outside rocked. It didn't feel great. Then the ferns stopped moving. Me in the hot tub, not so much. Got out. Rested. Felt better. Next day milder. Did it again. Again felt improvement. I do think my ear is a messed up...but I think this is seperate from it. I think it is something in your brains processing that has to somehow be spurred to reset. It feels so awful! I also think rest is somehow very important to healing. I am also peri menopausal, and have never experienced anxiety before, so I think there could be something with that as well....just common threads in reading....but I don't know what to make of it....I just know that last year things changed....I thought they got easier....but that was lie! Now I feel like I will think twice to getting on a plane or boat!